Dealing with chronic pain
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Ive been on a pain management programme

WaylayWaylay Member Posts: 915 Pioneering
edited January 2018 in Dealing with chronic pain
Hi all,

I'm in my 40's, living with chronic back pain and back spasms for a decade, and also have various mental health issues. I'm trying to fight a PIP decision at the moment.

I've recently been on a pain management programme, which was fantastic. Ask me about it, if you want.

Replies

  • JazzguitarJazzguitar Member Posts: 180 Courageous
    Welcome. I would like yo hear more Neville
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @Waylay

    Good afternoon & a very very big welcome!!!!!

    Yes I have had “Chronic Pain” since  2005.

    Please please can you let me/us know if you need any help/support you with your “pip”

    It would also be very helpful to know more about your “Pain Management Program”

    Thanks.

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    That is great to hear @Waylay I look forward to hearing about your experiences.
    Scope
    Senior online community officer
  • WaylayWaylay Member Posts: 915 Pioneering
    Will do - currently working on final MR stuff.
  • cher77cher77 Member Posts: 95 Courageous
    Hi all I also suffer severe chronic back pain my diagnosis are disc degeneration suffer with slipped disc bulging and prolapse disc sciatica stenosis just turned 40 last year and been suffering with this for the past 7 years but got worse 4 years ago been on all types of medication which leave me well not myself lol insomnia depressed at times no social or martial activities pain in hips legs back pins and needles in legs and feet numbness in places on legs bum burning sensation now been diagnosed with diabetes high blood pressure high cholesterol weight gain was healthy size 12 now I'm size 18 as can't excersise  at the moment I'm stuck upstairs as in that much pain at the moment as slipped 3 discs but this time not going into hospital occupational therapist say i need a house now with stair lift and wet room at loads of MRI exrays ect now finally got appointment for pain clinic on 8th Feb not sure what to expect if anyone can let me know physio won't touch me as in that much pain they just say don't know why you have been sent here haha can' x
  • cher77cher77 Member Posts: 95 Courageous
    @Waylay hi can you advice me as got my pain appointment on the 8th Feb not sure what to expect thanks x 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @cher77 being sent to physio is just a default referral. Almost everyone gets one, no matter what the problem.

    I have suffered chronic pain since 2005 and, at some time or other, everything you list. It is possible to get used to it and be able to move about (I suffer the equivalent of 8 slipped discs myself) with appropriate medication but you need to force yourself to not give in to the pain and to keep moving. Weight is likewise a decision you need to make yourself. Even if tablets make it worse you need to adjust your intake of food to lower levels as the less active your are the less food you need. Excess food simply goes to fat. I stress that it isn't a matter of dieting, just eating less. By doing this I have dropped from 23.5 stone to 14 stone.

    I hope you manage to resolve some of your worries and get back to a more normal existence.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • MisscleoMisscleo Member Posts: 646 Pioneering
    Well said topkitten but very hard to loose weight when in severe pain in all joints.
    I have to get upstairs on my bum. Every move is painfull.
    Im on mophine and codine only take edge off pain of arthritis
  • WaylayWaylay Member Posts: 915 Pioneering
    cher77 said:
    @Waylay hi can you advice me as got my pain appointment on the 8th Feb not sure what to expect thanks x 
    Hi there! I don't know what kind of appointment you're going to have, unfortunately. If it's your first one, it's *probably* an assessment of your condition, taking a history, reviewing test results, etc. Try not to worry about it! They're there to help you, although sometimes you do get a bad consultant.

    Useful things you could do to prepare, which would also probably help you feel less anxious:
    If you have MRIs or X-rays, etc., I'd bring them along. 
    You could write down your health history, including mental health, and a detailed account of the history of your pain, and bring them along. It'll save time, and make sure you don't forget anything. 
    You could also write down the meds you're on. 
    It might be useful to write a pain diary beforehand too. Basically, each day, you write a few things down every few hours:
    - how much pain you're in
    - any activities you've done, whether that's going to the gym or just washing a few dishes
    - any meds you take
    - your mood (depressed, excited, etc.)
    - how much and when you sleep
    - when you  eat, etc. 
    The doc might be able to see patterns in it that you don't. 

    Write down any questions you have.

    If you don't have the energy to do these things, don't stress about it! They may or may not be useful. 

    Be open to what the doc says, but also make sure that you tell them honestly about how you feel. They're experts on pain, so they can probably help, but remember that you're the expert on *your* pain.

    Good luck!
  • WaylayWaylay Member Posts: 915 Pioneering
    Oh, and they might give you some "tests" to fill in. Don't worry! They're just things that you fill in honestly and at the end the doc can score your answers and add up points. It helps them to understand how much pain you're in, how disabled you are, whether you have quality of life, etc. The NHS likes numbers. ;)
  • cher77cher77 Member Posts: 95 Courageous
    Hi @Topkitten and @Misscleo thanks for advice it's hard to excersise through the pain it's not just my back it's my hips legs neck arthritis ect so in constant pain 24-7 and everyone else copes in different ways the side effects from my tablets make me very dizzy disoriented unstable I've done excersise in the past and fell a numerous amount of times that have made me be hospitalised im not big overweight but from a size 12 to size 18 in 2 years is not that bad and it's not also about the food as my potion size are carefully calorie counted and controlled so i do eat less always have done cut all sugary foods out I eat fruit drink plenty of water ect can't manage stairs anymore hence why need to move house 
  • cher77cher77 Member Posts: 95 Courageous
    Been like this since 2002 but got worse year by year in fact day by day I'm practicually hose bound have no social life I've only just turned 40 but feel a lot older haha gets be down at times that's why I came on this site and to be told by @Topkitten to cut food down and to excersise when you don't know all my conditions as some are personal to me or you don't know my full situation you make me feel singled out and that I'm not trying my hardest to keep weight down like I said i appreciate your comments and trust me being in pain 24-7 does stop you doing certain things and everyone's disability are not the same even if have some same medical issues i am quite a strong person I've done child birth 4 times with the use of no drugs as i don't like taking them but this pain is totally different it's all the time and you don't get anything from it 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I wasn't advising exercise at all. Exercise for me just makes things worse. I just stated that almost everyone with these sort of problems gets sent there whether it is a good idea or not. I only mentioned the food because you seemed concerned by weight. In a family situation it is hard for other family members to understand your food requirements.

    Pain wise I have suffered for 12 years but only for the last 2 has any of it been in the back. It has always been in the legs and hips. Oddly, despite there being no real reason for it I have always had more problems around the joints than anywhere else. However, after over a decade of continual damage I now have nerve pain as the most damaged nerves have become permanently damaged and now report pain whether I move or not. Nerve pain is far worse than joint pain which is far worse than muscle pain. The type you suffer will govern how bad it is to some extent.

    Pain is subjective. The only way I have found to measure it person to person is by the amounts and type of pain killers taken. Over the years I have gone from no pain killers to high doses just to keep moving but keep moving I do, otherwise I might as well give up and die now. Generally people are started on Cocodomol. After that comes a number of other tablets and liquids such as Tramadol, DihydroCodeine, Oramorph and others. These are all or similar to Opiates. When these prove insufficient then you start the patches with Buprenorphine usually starting at 10 microgrammes per hour. 10  microgrammes is probably equal to 12-16 50mg Tramadol capsules per day. Buprenorphine though has a problem with about one third of users having an allergic reaction to the patch material (not the medication itself). If you have problems or if it is insufficient you get moved onto what is the final regular pain medication which is Fentanyl. There are 4 or 5 stronger meds but these are reserved for large animals or emergencies only. Unfortunately I am now up to 100 microgrammes per hour of Fentanly which is a level that terrifies most GP's but I still refuse to let the pain stop me. In general any dizziness or other bad side-effects are usually caused by taking too much of the medication.

    There is another class of pain killers which are used to treat nerve pain. These are Duloxetine, Pregabalin, Gebapentin, Amitryptylene and Nortryptylene. Whilst they are not as strong as opiates in general and do little for anything other than nerve pain they are extremely effective for nerve pain which opiates do little for.

    Unfortunately, with such a large selection, GP's tend to throw a lot of the lower level tablets at the problem trying to gauge what a person means by "a lot of pain" and often this means you are taking too much. Whilst it isn't a popular thing to do I always try to adjust the dosage myself.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • cher77cher77 Member Posts: 95 Courageous
  • cher77cher77 Member Posts: 95 Courageous
    Sorry @ topkitten i read it wrong x
  • WaylayWaylay Member Posts: 915 Pioneering
    Will return and write about PMP, promise! Still arguing with DWP, have had a mental health set-back as a result (what a surprise) and developed shingles (itch itch itch!!!) Fun. 
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Hi @Waylay, @cher77, @Topkitten, @Misscleo, @steve51,
    I just want to introduce myself as the new Chronic Pain adviser!  I have a long personal history of chronic pain from back problems (umpteen back surgeries) causing nerve pain and also generalised soft tissue and arthritic chronic pain due to a genetic illness, Ehlers Danlos Syndrome.  I have attended a pain programme at St Thomas's London, had a spinal cord stimulator implanted, used various different analgesics - but have also been on the other side as a pain specialist working as a hospice sister, before being clinically "retired" 10 years ago.  Yes, I have been through the benefits system too....both ESA and PIP!!  Great to meet you all - and I look forward to chatting, Claire 
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • WaylayWaylay Member Posts: 915 Pioneering
    Great to meet you Claire!
  • jamie1965jamie1965 Member Posts: 85 Courageous
    Hi just noted that deluxitine was mentioned as a pain med it’s main use is antidepressant that helps with pain mainly percribed for deep depression or fibromyalgia along with other pain meds haven’t known it to be prescribed for anything else in fact that is what it was licenced for 
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Duloxetine, amitryptilline and nortryptilline are antidepressants, and gabapentin and pregabalin are anticonvulsants (used for seizures in epilepsy).  However they have all been found to effective in the control of nerve/neuropathic pain and in recent years have been licensed by NICE accordingly.  They are all generally more effective than opiates in the treatment of chronic nerve pain - widely acknowledged as the most difficult pain to treat.
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @ClaireSaul

    It’s great to meet you today!!!!

    I hope you are ok “pain levels”

    It’s great to know that you are a “Pain Advisor” here!!!!!!

    I’m very sorry to pester you “straightaway”

    But my “pain journey” since 2005 has been a real nightmare!!!!!

    It seems to be the same situation for now & the near future which is “Great News” no not really!!!!!!

    Many thanks.

    Steve.


  • sarahtsaraht Member Posts: 3 Listener
    I have chronic pain in my shoulders,aswel as having palindromic arthritis, iv had surgery on one shoulder and waiting for the other, but now my surgeon has retired and theres no replacement yet, been in pain everyday for over 4 yrs now,and its so debilitating and depressing,also waiting for pain management as my last injection didnt work, my pain medication keeps being swapped around but dont help much anyway, i do every kind of self help i can as i used to be a therapist and sports masseuse but the pain drives me to tears.  
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Hi @steve51,

    Pleased to meet you too!

    So sorry to hear that you have been in pain for so long - pain is draining, physically and emotionally and can impact on so many areas of life.  I think that one of the hardest things can be the feeling that nothing is going to change.

    Are you able to tell me a little bit about your pain - if you are happy to do so?  Do you have a support network around you (including medics)?

    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi Claire.

    Many thanks.

    Since 2005 I have gone from here in Birmingham to Oxford to Liverpool. I have been/still am very desperate in controlling/dealing with my pain.

    They all want me to have “Deep Brain Stimulation”
    But the NHS won’ fund the treatment. 

    This won’t happen in my time as NICE won’t give it the green light.

    All that happened at my 12mnt appointment’s was that the NHS still won’t budge see you again in 12mnts “great”

    Sorry to go on!!!!

    Steve.
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    @saraht

    You are obviously having a very tough time.

    Do you have a supportive GP?  I'm wondering if the pain management you mention is the new shoulder surgeon (orthopaedic?) or a pain management team/course?  Maybe your GP could explore pain clinics and programmes in your area with you.....I do appreciate that you may already be under a clinic, but if you're not it would be worth exploring as the doctors will have a different outlook on the medications.  

    There are also some fantastic support groups out there.  I think that most of us know that our physical pain can spiral when we are hit by stress, lack of sleep or other emotional factors and so a vicious circle unfolds.  Whilst a support group won't take away the root cause of your physical pain, just having some other people who understand to support you might help with some of the emotional turmoil that comes with being in pain every day.  What social media groups do you use?

    In my experience I have sometimes found that other medics assume that I have all the necessary knowledge ass an ex nurse, and so they don't need to explain things fully.  I wonder if you might be experiencing something similar and others all assume that with your background you don't need their input - whilst clearly you do.  Some tips that might be beneficial:
    Heat pads - electric or microwave wheatpads, electric blanket in the bed
    Relaxing in a bath of epsom salts
    Topical gels and rubs (for instance ibuprofen gel)
    A gentle exercise such as pilates (try the APPI as a start point)
    Mindfulness/meditation
    Essential oils (you probably do know more about these than me!)
    Learn to pace your activity and accept help.  Asking for help is a strength , not a weakness!
    A healthy bedtime routine to help you sleep well - try to eat your evening meal earlier, warm bath, keep a regular bedtime, shut down electronic devices several hours before going to bed, avoid caffeine in the evening and opt for a milky drink prior to bed, ensure your bedroom lit with a low light and take a book to bed rather than watching TV - train your body that your bed is to sleep in.

    Finally keep talking to those of us who understand.  Your family and friends may want to support you, but if they haven't experienced the drag and turmoil of daily pain, they can't be expected to understand.

    I do help this might help - please keep in touch,

    Claire


    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • Gail1205Gail1205 Member Posts: 6 Listener
    cher77 said:
    Hi all I also suffer severe chronic back pain my diagnosis are disc degeneration suffer with slipped disc bulging and prolapse disc sciatica stenosis just turned 40 last year and been suffering with this for the past 7 years but got worse 4 years ago been on all types of medication which leave me well not myself lol insomnia depressed at times no social or martial activities pain in hips legs back pins and needles in legs and feet numbness in places on legs bum burning sensation now been diagnosed with diabetes high blood pressure high cholesterol weight gain was healthy size 12 now I'm size 18 as can't excersise  at the moment I'm stuck upstairs as in that much pain at the moment as slipped 3 discs but this time not going into hospital occupational therapist say i need a house now with stair lift and wet room at loads of MRI exrays ect now finally got appointment for pain clinic on 8th Feb not sure what to expect if anyone can let me know physio won't touch me as in that much pain they just say don't know why you have been sent here haha can' x

  • WaylayWaylay Member Posts: 915 Pioneering
    I gained a lot of weight too when I was first injured. I cut down my food intake and tried to do anything that might keep my metabolism up. I'd have hot baths and do small movements, like swimming. You can only do so much; 18 isn't bad. I know it's not how you want to be, but have compassion for yourself. You're going through a very difficult situation. Unfortunately, my depression has caused me to stop eating for days at a time, so now I'm very underweight. GP threatening me with a section of I don't eat more. 

    Something I've found helpful: my pain clinic siggesugg we stretch three times a day: shoulders, neck, back, hips, arms, thighs, calves. Gentle stretches, slowly, and stop if pain gets worse. Rest in between if you need to. I often have to do them lying down. It has really helped. All my other muscles were tense and painful because I was tightening up due to the pain. Stretching keeps that to a minimum, and also seems to help my back - maybe other muscles aren't pulling on it so much?

    The pain clinic also taught us relaxation exercises. I was dubious, but they really help me. You have to do them a couple of times a day for several weeks to get in the groove, but it's worth it. 


  • WaylayWaylay Member Posts: 915 Pioneering
    BTW, sorry I haven't talked about my PMP yet. DWP has sent me into a mental health tailspin. Will do it at some point!
  • CatLady28CatLady28 Member Posts: 4 Listener
    Hi @Waylay, I wonder how you found the Programme? I’m on one currently, but I’m finding it really hard going.
  • WaylayWaylay Member Posts: 915 Pioneering
    @CatLady28 The first few days were really difficult, and really painful, but it got slowly better after that. The whole 3 weeks I'd basically wake up, get dressed, go to the programme, go back to my room, eat a sandwich, and go to sleep. Completely exhausted the whole time, but hey, I'm usually a massive insomniac, so it was actually refreshing.
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